Pockets of missed vaccinations have long spurred outbreaks of disease in the U.S., such as measles, mumps, and whooping cough. If the public doesn't know who is unvaccinated, hospitals and outreach groups can't work to reach them.

Despite this desperate need, both city and state health officials have failed to produce data on the race, ethnicity, gender, and zip codes for the recipients of nearly 1.5 million doses of the COVID-19 vaccines.

Public health experts and elected officials in New York fear a continued lack of access to this data will exacerbate the already harsh health inequities that the COVID-19 pandemic exposed. Seventeen other states are already reporting this information.

Registration forms collect this information during the signup process for the vaccine, and officials admit this data is on hand. During the first few weeks of the rollout, the New York City’s Health Department had published demographics in their vaccine dashboard, but the data was taken down before the new year.

Those early numbers indicated stark disparities in the first two weeks of vaccine distribution for phase 1a. About five percent of those vaccinated are identified as Latino or Hispanic and Black or African American, but these communities make up 29% and 24% of the city’s population, respectively. White people received about five times as much vaccine, while making up 42% of the overall population. About 40% of recipients didn’t mark down their race or ethnicity.

During the early stages of the vaccine rollout, the New York City Department of Health and Mental Hygiene released demographic data. The information was pulled in late December. Note: City officials said the addresses in this early layout may have corresponded to where people were vaccinated rather than the recipients' home addresses.

Even though nursing home residents were eligible for vaccinations at the time, those getting immunized skewed younger. The biggest group--ages 25-35--received more than 17,000 immunizations, while people over 75 accounted for about 1,000 shots.

City officials wouldn’t say why the original dataset was removed from its website, but on Monday, Mayor Bill de Blasio said he plans to re-release the numbers later this week. Patrick Gallahue, a spokesman for the city’s health department, said the preliminary data represented just 57,000 people eligible for phase 1a of the rollout, a small fraction of the 650,000 who’ve received vaccine doses as of January 26.

“We are fully aware of the drivers of healthcare disparities, and we are actively working to ensure that New Yorkers are vaccinated equitably,” he said, echoing state and city pledges for equitable distribution. “The #NYCVaccineforAll campaign will only be successful if we effectively counter the racism in healthcare that drove COVID’s disparate impact.”

But without accurate real-time data, Dr. Uché Blackstock, founder of Advancing Health Equity and a medical contributor to Yahoo News, said public health campaigns couldn’t direct their resources. It is also unclear how many doses of Moderna and Pfizer vaccines--the two authorized options--are being administered each day, a key metric for determining how many people complete the full course of their immunizations on time and receive the maximum benefit.

“Where do we need to do more public health messaging around concerns about the vaccine? Where do we need to set up mobile units or be in community centers? Where do we need to make vaccines more accessible?” she asked, adding that the current situation harkened back to the early days of the pandemic when people put pressure on the city to release demographic and neighborhood information about COVID-19 infection rates and deaths.

When demographic data was finally released on April 8th, 2020, it showed Black and Latinx New Yorkers were dying at rates nearly twice that of white and Asian ones. This trend continues today.

“It’s almost like we didn’t learn from the first time,” Dr. Blackstock said.

Such data is critical for identifying why communities are being left behind, said Dr. Wafaa El-Sadr, an epidemiology professor and the director of the public health initiative ICAP at Columbia University’s Mailman School of Public Health. She cited issues like the lack of access to internet technology or transportation. Demographic data can also pinpoint who is reluctant to get vaccinated.

“Once we know why, then we can actually tailor the interventions based on the reasons for this disparity, El-Sadr said.

This data can also keep communities safe. Maimuna Majumder, a computational epidemiologist at Harvard Medical School, explained how the long-term goal of herd immunity works neighborhood by neighborhood, not in city-wide or state-wide statistics.

“Just because a country or a state reaches high levels of vaccination doesn't mean that every member of those populations is protected,” she said. In 2019, for example, slumping vaccination rates in pockets of Brooklyn and Rockland Counties led to the largest measles outbreak in nearly 30 years.

New Jersey began releasing demographic data for its vaccine campaign in mid-January.

New Jersey Department of Health/ESRI

“It’s absolutely crucial that we show the people of this city how this is going, and it’s part of making sure that we act to address the disparities that have pervaded the COVID experience,” Mayor de Blasio said at a Monday press conference. Last week, state officials made a similar promise to release demographic data, though they didn’t provide a specific timeline.

Neighboring states such as New Jersey and Pennsylvania are already publicly reporting demographic data of vaccine distribution. In New Jersey, that data also captures racial inequities of distribution; Black and African American people and Latinx people make up about 15 and 20 percent of the state’s population respectively, they account for only 3 and 4 percent of vaccinations each.

“There’s a lot of data coming into the system. We are compiling it. We are analyzing it and making sure it’s accurate,” said Gareth Rhodes, a top aide to Governor Andrew Cuomo, at a press conference last Friday. “Once there is accurate data that we feel comfortable with, we can release it.”

The complex online appointment system has created headaches for even the most tech-savvy New Yorkers, whereas an appointment hotline often puts callers on hold indefinitely. (On Tuesday, the hotline simply said there were no appointments before cutting off the call.) Advocates fear the barriers to scheduling appointments are likely to prevent some of the most vulnerable New Yorkers from getting them. With the vaccine supply dwindling, the city has had to cancel thousands of appointments for first doses en masse, creating further uncertainty.

“We were trying to make those calls on the seniors' behalf to get those appointments scheduled, and it was difficult,” said Simone Dundas, the program director at the Vandalia Senior Center in Starrett City, one of the neighborhoods hit hardest by COVID-19 last spring. About a dozen people who attended the center died from the virus, Dundas told Gothamist last May. Despite her best efforts in the two weeks since older New Yorkers have been eligible for vaccines, she couldn’t get a single one of her seniors an appointment.

Some relief arrived this weekend after the state set up a pop-up vaccination site for a day at her senior center. About 150 of her seniors got their first shot. She said it’s a welcome change, but she worried about the other elderly residents in the area who hadn’t been so lucky.

“What about the seniors that [don’t] belong to a senior center?” she said. “How can they get the word out to them?”

Nsikan Akpan contributed reporting. Editor's note: An image caption has been updated with extra context about the addresses in the December vaccine data.